From: MShernoff@aol.com
Date: Tue, 19 Mar 1996 08:04:11 -0500
Subject: psychotherapy with PWAs
attached is an article I recently authored about my work doing psychotherapy
with PWAs as an HIV+ therapist. Please post it in the AIDS Resource library.
Thanks
MShernoff@AOL.COM
THE LAST JOURNEY: Remaining fully alive in the face of death
(Psychotherapy with People With AIDS)
by Michael Shernoff, MSW, private practice, NYC
=0D
Published in
The Family Therapy Networker January/February 1996
=0D
I have no conception of what happens when we die, nor do I have any faith=
in life after death. I believe this lifetime is it; no heart warming reu=
nions in some puffy-clouded heaven, no karmic roulette followed by rounds=
of rebirth. I suspect that who and what we are simply ends, our hopes, d=
reams, memories, pains and frailties draining from us as consciousness di=
ms and finally switches off. In clinical situations, I have to tread care=
fully around my own metaphysical skepticism when clients who are grapplin=
g with life-threatening illness talk about an afterlife. I let them know =
I think it's wonderful that they have their faith and try to guard them f=
rom my own suspicion that death is an empty abyss.
=0D
Since the early 1980s, when the AIDS plague began to spread within the ga=
y community, I have been surrounded by illness, death and grief. My oldes=
t brother, Henry, died of AIDS in my apartment in 1984. =
=0D
My best friend and colleague in my private practice, Luis, died of AIDS i=
n 1989. Six men in my apartment building have died of AIDS in the last fe=
w years, as have more than 100 of my clients, while dozens more are now s=
ymptomatic or in the hospital. Four of my closest friends have died in t=
he last 12 months and, hardest to bear, my lover, Lee, passed away a few =
months ago, at age 32, from the disease. In the face of so much loss, tho=
se accounts of a tunnel of white light or the soul's triumphant escort by=
a chorus of angels seem like a child's story devised to soothe and comfo=
rt. I've had to become matter-of-fact about how the body inevitably fails=
us, and most of the time I don't worry about what happens when we die. I=
try to stay focused on how to live life well and how to help my dying cl=
ients end their lives well.
=0D
This is nothing like what I expected I would be doing when I was training=
to be a therapist. Back then, I had certain young and hopeful ideas abou=
t the potential of human beings, within a normal lifespan, to grow in sel=
f-awareness. My job as I saw it was to help them make changes that would =
allow them to lead happier lives. But by the mid-1980s, I suddenly found =
myself with a clientele made up largely of gay men who were either sympto=
matic with AIDS or anticipating the onset of symptoms, many of them under=
the age of 40. In 1983, as a volunteer at the Gay Men's Health Crisis (G=
MHC), I was working with dozens of gay men with AIDS. At that time, the G=
MHC was sounding the alarm that this illness was going to become an epide=
mic in the gay community. Even those of us working with AIDS clients ever=
y day could not wrap our minds around how this illness was devastating ou=
r community. As an action oriented person, the hardest thing for me was k=
nowing that despite my most creative and skillful clinical maneuvers, I w=
as not going to change the essential fact that these men were dying.
=0D
When my clients and friends began to learn about their HIV infection and =
become symptomatic, I had to learn a whole new set of clinical skills. Be=
fore AIDS, active alcoholism, drug addiction and Hepatitis B were the onl=
y life threatening illnesses that were likely to kill the gay men who mad=
e up most of my clientele. All I really knew about counseling clients and=
their families at the end of life was Elisabeth Kubler-Ross's work on th=
e stages of grief and loss. Back then, I remember being surprised and ann=
oyed when my clients refused to follow the predictable, linear pattern sh=
e had laid out. Without realizing it, I romanticized death and unconsciou=
sly glorified each of my dying clients. I wanted to see them as noble and=
worthy of my care because of their nearing death, and I was constantly b=
rought up short: people die in character. I didn't yet want to see that a=
self-involved man who became sick with AIDS might very well handle his i=
llness narcissistically and die the way he had lived, thinking only of hi=
mself. I had to learn I wasn't going to like everyone simply because they=
were dying, and that death doesn't necessarily transform people for the =
better. =
=0D
My brother was a painful example of this. As adults, Henry and I had neve=
r gotten along well, despite both of us being gay, but when he arrived in=
New York penniless, homeless and sick, I invited him to stay. Although I=
took care of him and made sure he was comfortable and had what he needed=
, we never grew closer as brothers. I hadn't liked him before he became i=
ll, and nothing improved during his stay with me. When he died, I mourned=
the loss of a brother, but I was also relieved that Henry was out of my =
apartment.
=0D
Hollywood has pumped us up with a sanitized, sentimental version of death=
: everyone is gathered around the dying person's bedside and fences are m=
ended, old wounds are patched up, then the dying imparts a last jewel of =
wisdom before the gentle closing of the eyes. There's no shrieking with f=
ear, no groaning from the intolerable pain, no dying alone in an imperson=
al hospital bed, no homophobia. In too many AIDS cases, however, families=
are so full of anti-gay hatred that they can't even offer a kind word to=
a dying son or brother or father. I've even seen supportive families hav=
e a hard time with an AIDS-related death. Lee's parents wouldn't come to =
see him before he died. They couldn't bear to see their beautiful son was=
ting away and so they put their own needs before his. This doesn't make t=
hem bad; it's just a sad fact that we don't always rise to the occasion, =
even when we're confronted with the finality of death.
=0D
I have seen this in myself. Despite everything I know about the progressi=
on of the disease, I would lose my patience with Lee toward the end. Adju=
sting to his dementia was taxing, and at times I would yell at him about =
something that, in hindsight, was really insignificant, like the way he w=
ould ask me the same question five times because he couldn`t remember the=
answer. As he deteriorated physically, I flared up in anger when he woul=
d remind me that he could no longer walk as quickly as I or he'd become t=
ired and need to return home sooner than we had planned. It was a struggl=
e not to direct my frustration at him, and underneath it all was the pain=
ful reminder that he was leaving me. I don't think any of us is prepared =
for our partner suddenly becoming a dependent.
=0D
Slowly, as he stopped being the perfect companion he had always been, I f=
ound myself missing who he was even before he was gone. The last time I y=
elled at him, he turned to me with upturned palms, shrugged and told me, =
" I can't help it that I'm demented!" I suddenly felt about two inches ta=
ll and, after apologizing for losing my temper, I vowed never to yell at =
him again. =
=0D
I have also seen the other side, how a client's illness has the potential=
to become the catalyst for unexpected love and caring within their famil=
ies, healing rifts after years of hurt and anger. The mother of one of m=
y clients was a Southern fundamentalist Christian who had a difficult tim=
e with Sean's being gay. She rarely called him and when she did, it was t=
o let him know she was praying for him to be saved. In the course of ther=
apy, while Sean was still healthy, I urged him to contact his mother and =
let her know he had AIDS. If he didn't give her the information, he would=
never know if there was a possibility of reconciliation. I prepared Sean=
for the other possibility, too: that she would say AIDS was God's retrib=
ution for his "immoral" lifestyle. I also explained that knowing her resp=
onse would help him later, when he became sick and needed to decide how m=
uch of his energy he wanted to focus on his family of origin. I always as=
k clients whether they want to put their energy into mending relationship=
s before they die, and if they do I might accelerate the work, pushing th=
em harder than I would a client who doesn't have a death sentence hanging=
over his head.
=0D
Sean's mother was shocked and speechless when he told her he had AIDS, bu=
t she started calling every week. "How are you?" she would ask. "Fine," h=
e would say. But one week, the dam broke and he yelled, "Do you really wa=
nt to know how I am? Do you really want to know about my fears, my life?"=
She began to cry and said that, in fact, despite their years of alienati=
on, she did want to know what he was going through. Their weekly phone co=
nversations became much more open and loving, and when he became sick, sh=
e moved to New York and stayed in his apartment to care for him. I saw th=
em for several family sessions, during which they each expressed their lo=
ve and also the pain they had experienced during the cut-off. Throughout =
his illness, she marveled at how supportive and loving Sean's gay friends=
were, and before he died, she was able to tell him how glad she was that=
he had so much love in his life. My client died having achieved that pea=
ce, and his mother has since become an AIDS activist. These are the best =
kind of deaths, the ones in which people use the time they have left toge=
ther to open their hearts and grow. When people ask me why I`m not comple=
tely burnt out after years of doing therapy with the dying, I think about=
how I've been inspired beyond words by moments like these. And doing thi=
s work has its selfish benefits as well, insofar as I no longer assume th=
at time stretches out limitlessly. It makes me focus on what matters.
=0D
One of the most complicated aspects of my work is that, from the first mo=
ment in 1982 when one of my clients talked about the mysterious symptoms =
he was experiencing, I was aware that my lifestyle was no different from =
his or most of my other clients who were becoming sick. We visited the ba=
th houses, had anonymous sexual encounters, and certainly had never heard=
of safe sex. When we began to understand what this new illness was, I kn=
ew that in all likelihood, I was watching a preview of my own demise. It =
was impossible to maintain my clinical detachment in those first few year=
s of treating clients who had AIDS. Every client was me-the afflicted, th=
e survivor, the one who is left, the one who will have his turn. I had to=
confront my discomfort with illness, the horrible smells, the fear of be=
ing around people in pain or losing their faculties, and stay present as =
a therapist. I couldn`t use a client's imminent death as an excuse not to=
have a relationship with him, or allow my own horror of abandonment to p=
ut distance between us. =
=0D
And then there was the problem of burnout: everyone I knew, it seemed, wa=
s on death's doorstep. The first few deaths of my clients were terribly t=
raumatic. Even as I grieved and went to the funerals and memorial service=
s, I grew angry and frustrated that my clients' lives had been cut short.=
Some of them were tremendously gifted and creative, and the loss seemed =
unspeakably tragic. Then, after so many deaths, I went through a period o=
f numbness and couldn`t grieve for anyone. People would tell me about som=
eone who had died-someone who may have been my client for a time-and I wo=
uldn't be capable of calling his lover to express my sympathies. I was ov=
erwhelmed and shut down, not just to
loss but to every kind of connection. I didn't know how to deal with it a=
nd felt like a passenger on the Titanic as it began to take on water, run=
ning from end to end offering my meager ministrations as the ship kept si=
nking. When Henry was near the end and camped out in a hospital bed in my=
living room. and Luis was in the hospital being treated for an AIDS-rela=
ted illness, I went to visit a client who was also in the hospital with A=
IDS. It had taken me an hour to get across town and I was feeling stresse=
d and overloaded by the time I got up to his room. Grant was glad to see =
me, gave me a big smile when I walked in, and when I asked how he was doi=
ng, he said, "I think I'm about ready to die." I had been seeing this 38-=
year-old lawyer for five years, and my response to him was, "I can unders=
tand why you would feel that way," and then I changed the subject and, sh=
ortly after, I left.
=0D
When a well client (who isn't suicidal) says he or she is ready to die, o=
ften this is a kind of conversational hyperbole, but when a hospitalized =
AIDS patient says it, there are myriad questions to ask, including what m=
edical or family or economic issues have lately come up to make them feel=
ready to stop living. But in my overwhelmed state, I was ready for every=
one to die so I could have a life again, and so I accepted Grant's statem=
ent and didn't probe any further.
=0D
Later that day, I took a taxi back to the hospital and apologized. ''You =
know, I'm sorry I didn't ask you why you felt ready to die. What's going =
on?" Grant was visibly relieved I had returned, and told me the hospital=
was ready to discharge him but he had become incontinent and was afraid =
of soiling himself at home, where he had no one to take care of him. His =
shame at this loss of control was more fearful to him than dying. I got o=
n the phone and managed to extend his hospitalization. He died there, thr=
ee weeks later.
=0D
I waited a long time to be tested, putting it off until there seemed to =
be some reason to do so. Once there was an indication that the drug AZT m=
ight help people with AIDS if it was used early enough, I presented mysel=
f at the doctor's office, Of course, I assumed I was positive-I had had s=
exual partners who had died of AIDS. Even so, I was shocked when I heard =
the words, "You tested positive." Suddenly, every headache was a brain tu=
mor. I became the worst hypochondriac and talked about "When I get AIDS" =
incessantly to myself and everyone else. I struggled with the ethics of t=
aking on new clients when I might get AIDS and die before they were ready=
to end therapy. After six months in a terrible depression, I realized I =
was still in excellent health-knowing I had HIV hadn't changed anything-a=
nd gradually I came back to life. But, like a cancer patient who is in re=
mission, I have to keep checking to make sure I'm not on the decline. Eve=
ry long-term commitment, like renewing the five-year lease on my office, =
brings me back to the uncertainty of my continued existence. I haven't ha=
d the luxury of retreating into a comfortable denial about my mortality b=
ecause I have been spared no unimagined detail about what an AIDS related=
death might be like. When I am feeling particularly morbid, I dwell on t=
hese scenarios. Most frightening to me is the prospect of becoming dement=
ed while maintaining an awareness that it's happening. At the end of his =
life, Lee couldn't watch TV, forgot names and would get lost on the block=
if he went out unattended. The indignity of losing my independence scare=
s me the most.
=0D
There is also the complication of running a practice, taking on new clien=
ts, and planning for the future while being aware of the time-bomb within=
me. Do I tell my clients I'm HIV-positive? Should I be preparing them fo=
r the time I will no longer be here? I knew two therapists who handled th=
eir practices quite differently when they became symptomatic with AIDS. W=
hen Luis was hospitalized the first time, I called his clients and explai=
ned that he was sick and was canceling all his appointments for two weeks=
=2E In the meantime, Luis was wracked with indecision: he had just built =
up a thriving practice, but he worried that he wouldn't be able to provid=
e the continuity his clients would need now that he was symptomatic. "I n=
eed to tell you what was the matter with me," he told each one three week=
s later."I have had a sudden onset of AIDS and am going to stop practicin=
g psychotherapy in two months, In the next 8 to 10 session, we will have =
to wind up our work, and I can give you a referral if you want to continu=
e with someone else." He kept the sessions focused on the clients' needs,=
resisting their attempts to take care of him. He was emotionally exhaust=
ed during those two months, but the people in his caseload who later beca=
me my clients talked about how grateful they were for how he had taken ca=
re of them even at the end. =
=0D
Bill, on the other hand, stayed in practice during most of his illness. A=
fter he disclosed that he had AIDS, he asked his clients if they wanted t=
o stay in therapy with him. At one point, he required that they pay him i=
n cash since he was already on disability. After he died, a few of his cl=
ients started to work with me and they each felt angry for the way he had=
handled the situation. He had made it clear that being able to continue =
working was keeping him alive. Even though they hadn't really wanted to c=
ontinue with him, they felt guilty and disloyal for wanting to move on. T=
hinking about how I will do it when the time comes, I've decided to try t=
o take two months to end with all my clients, without disclosing my HIV s=
tatus but saying I'm retiring from practice. I would carefully choose whi=
ch clients with whom to share the real reason. In the event that I become=
ill so quickly that there's no time, I have written a letter and address=
ed envelopes to each of my clients referring them to other therapists and=
urging them to nurture the core of health that we've been working on. It=
was incredibly hard to write this letter. Not only did writing those let=
ters make the uncertainty of my life real, but it challenged, once again,=
my grandiosity, the belief that I am the only one who can really help th=
ese people.
=0D
I have often been on the other side, as the therapist to whom clients go =
when their therapist has died of AIDS. I notice that clients often start =
off either idealizing or vilifying the deceased clinician. They may be su=
spicious of me, wondering if I'm going to leave them the same way they've=
been left. These clients need me to be constant and unwavering and never=
cancel an appointment for a mysterious reason. A few years ago, I injur=
ed one of my hands and had to go to the emergency room. One of my colleag=
ues called the clients I was to have seen that afternoon to cancel, telli=
ng them I had an emergency and would call them later to reschedule. One o=
f the men, 32-year-old Lawrence, had lost two therapists to AIDS within =
two years of each other. That night, he was the first client I called, be=
cause I knew he was probably anxious about my health, and when he came in=
the next day he told me he had, in fact, gone into a panic and fantasize=
d that I was about to die of AIDS. The phone call from my colleague had r=
eawakened all the feelings he had about the deaths of his previous therap=
ists, as well as several close friends, who had died recently. He told me=
it occurred to him that he didn't even know what my HIV status was, and =
then said he felt he might have been holding back in therapy out of fear =
that I, too, might die in the middle of treatment.
=0D
I told him I was glad he had told me what he had been through, and that =
I wasn't sure how I'd respond to a request from him to learn about my HIV=
status, Before answering him, I wanted us to spend time exploring what i=
t would mean to him if I was HIV positive, and what it would mean if I wa=
s negative. I told him that before I made a decision, I would have to thi=
nk about where he was in his therapy work first, to see if I felt having =
this information would get in the way of his own work. He told me he felt=
very taken care of by me and then said he wasn`t sure he even wanted to =
know my HIV status. I felt good about the way I handled this session with=
Lawrence, but it was difficult for me, raising questions and anxieties I=
hadn't really confronted before. What if Lawrence had insisted on knowin=
g my HIV status? Did he have a right to this information? What if he refu=
sed to come back unless I told him?
=0D
These days, I come out as HIV positive on a case-by-case basis, but in ge=
neral I'm not very self -disclosing. Even when I use examples from my own=
experience of illness and loss in the therapy, I won't say it's me that =
I'm taking about. I regret the need to conceal this important fact in my =
life, but I have come to believe it is in my clients' best interest. Afte=
r Lee died, I was listed in the obituary as his partner, and many of my c=
lients saw it and wanted to spend their sessions comforting me. One told =
me he felt guilty complaining about his boyfriend when I had just suffere=
d this terrible loss. I told him that his working hard in therapy was the=
best thing he could do for me and that by giving him my undivided attent=
ion, I was distracted from my own pain. Once more, I had to tread the lin=
e between being a human being to them, as vulnerable and full of pain as =
they were, and also being the therapist whose role was to help them focus=
on their own stuff, not mine. I thought very carefully before I responde=
d to the ones who sent me condolence cards,
=0D
Therapy work with AIDS patients can seem banal as we discuss everything f=
rom wills to bowel movements. It may not seem as if much is going on as I=
sit with clients in their hospital rooms talking about their medical tre=
atments, or just murmuring soothing words as they endure intense physical=
pain. My simple questions to clients with dementia may not even penetrat=
e their mental fog. But I truly believe that just being there and caring =
about them is extremely healing. There are different stages of therapy wi=
th clients who have AIDS, and each stage may be radically different, Clie=
nts who have just found out, or are just dealing with their positive HIV =
status, I encourage to talk about their fears, their regrets, their anger=
=2E I tell them about long-term survivors and nonprogressors-people like =
me who have HIV but don't become symptomatic. There have been clients wit=
h whom I identify myself as a long-term survivor to give them some living=
embodiment of hope.
=0D
One client, Mark, a 3 l-year old Syrian American Jew, came to me shortly =
after learning he had HIV. He was profoundly anxious, depressed and putti=
ng himself at further risk by practicing unsafe sex. Several months of th=
erapy made no dent in his belief that he was about to die, in spite of th=
e fact that his energy was good and he had no symptoms of HIV progression=
=2E Feeling that I had a basic therapeutic relationship well-established =
with him, I revealed that I had been exposed to HIV for at least 16 years=
, and that although my T-cell count had fallen and I had started anti-ret=
roviral therapy, I still had boundless energy for the gym, work, play and=
travel. By offering myself as a role model for living well with HIV, I h=
elped Mark understand that having HIV didn't mean he was dying. My self- =
disclosure was a pivotal moment in Mark's therapy, and from that point he=
was able to overcome his anxiety and depression and begin to plan for th=
e future again. =
=0D
Therapy can be a desperately needed respite from the overwhelming challen=
ges facing many of my clients who have AIDS. I remember a couple I saw se=
veral years ago, David and Joe, who died within six months of each other.=
They had met in college as undergraduates and 10 years later, living tog=
ether in New York, both developed AIDS at the same time, contracting the =
same diseases. All of their close friends were sick or had died, so one o=
f my interventions was to refer them each to separate AIDS support groups=
=2E I could see they needed time apart to talk about what it was like bei=
ng sick, without worrying about the other. I also referred them to a coup=
les group so they could talk about the impact of AIDS on their relationsh=
ip. David became the primary caretaker, in spite of the fact that he was =
also ill, and after Joe died, he had to both grieve for Joe and come to t=
erms with his anger at having been left alone to face his own death. He q=
uickly deteriorated and died six months later. With clients who become sy=
mptomatic, I typically ask them if there are certain things they want to =
focus on specifically in therapy-certain relationships they want to impro=
ve or inner questions they want to try to answer. When a healthy HIV-posi=
tive client obsesses about death, I may challenge his view that his life =
is already over, knowing, from my own experience, how long a healthy pers=
on can thrive even with the infection. It is often a relief to these clie=
nts to know they have a place to go once a week to talk about a topic tha=
t may be too painful to address with their loved ones, or too dangerous t=
o talk about at work. When the client is close to the end, I have to tole=
rate my discomfort that nothing I do will change the outcome, and appreci=
ate the power of being present with these clients, being genuinely curiou=
s about their dreams and aspirations even as they are ending life, asking=
about their present moment, how they make accommodations to their body's=
breakdown. Being present with the dying can be frightening. Like most pe=
ople, I spend a lot of time with the panicky thought, "This could be me!"=
=
=0D
I have been privileged to witness several inspiring endings, which taught=
me how much I could do to help a person die well. In the final weeks of =
Luis's life, he was living at home and every breath was a struggle. His l=
over, Dennis, sat by his bed and held his hand and told him he loved him =
very much, he thanked him for all the wonderful years they had shared, an=
d then he wisely told Luis that it was alight if he died. His friends als=
o let Luis know it was okay with us if he died. This was the first time I=
had ever said those words to someone, and it was excruciating. But that =
night, Luis's breathing eased and he died peacefully early the next morni=
ng. When I held Lee in my arms and said those same words to him, my heart=
broke but I also knew it was right. His body was no longer useful to him=
=2E Undramatically, Lee just stopped breathing, and this gentle, sweet ma=
n left me. I felt grief, and loneliness, but I didn't feel numb.
=0D
Over the years, burnout has turned into gratitude that I'm alive, I want =
to be as viscerally and emotionally present as possible. Why waste a minu=
te? I get more done in a day than some do in a year. The exquisite intima=
cy Lee and I were able to have together during his illness was a transcen=
dent experience. I started to feel that there's an essence of each person=
that may be both biochemical and spiritual, and as he ended his life, I =
was able to make contact with his irreducible self with such depth that I=
now understand what people mean when they say of someone who has died, "=
He is still with me." I may be a skeptic about the afterlife, but I find =
a spiritual quality in being present in the here and now, which gets me t=
hrough the loss. My work seems very meaningful, to be able to connect in =
this extraordinary way with so many good souls; so instead of feeling in =
jeopardy of burning out, I am thankful to have had the privilege of accom=
panying my clients on the last journey of their lives.
=0D
When Lee became sick, I would say to him, "You're a traditional, believin=
g Christian. Does that comfort you?" He said, "Yeah, I think the energy d=
oesn't end." So half-jokingly, I asked him to send me a signal from the o=
ther side after he died. He died on a Thursday. On Saturday, his body was=
taken to be cremated. I awoke at 5:00 in the morning and saw the lights =
in the room were on but the switch was off. I wasn't sure what that meant=
, but I started talking to Lee. I said, "Let's be Whoopie in Ghost; and w=
aited for him to take over my body. I didn't feel anything. Then, seized =
with a great, lonely ache, I got up and put on the video I had made of hi=
m before he died. Inexplicably, the lights dimmed and went off when the t=
ape started. I became violently ill-was it nerves? I'm not sure-and then =
fell soundly asleep. I don't know what to make of this experience but it =
was comforting, and also confusing as all hell. The kind of Judaism I was=
raised in gave me no way to conceptualize what happens after death. How =
do we live not knowing there is something better afterward? Lee felt we w=
ould all be reunited on an energy and love level. I don't formally believ=
e it, but I confess to holding a kernel of hope that he was right.
=0D
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